This is a post I have been wanting to write for some time now. Inflammatory Bowel Diseases are gnarly and patients are often left after the diagnosis with unanswered questions. Even more so, the caregiver may feel helpless, feeling like he/she doesn’t know the best way to care for the IBD patient. For this very reason, I want to offer hope to both the patient and caregiver. I mentioned to my fiance and best friend that I was writing this piece and asked what advice they would give to caregivers of newly diagnosed patients. Here are a few tips they came up with:
6 Tips To Be A Rockstar IBD Caregiver:
- Research, research, research. Do lots of research on your loved one’s so you understand what the doctor is talking about and so you know the right questions to ask. This will also give you a much better understanding of what is going on inside your loved one’s body when he/she mentions pain, swelling, etc. Research is constantly changing, so continue to do research even after you have a good grasp on the basics of the condition. You might even discover a new trial or medication that could help!
- Open communication. Let your loved one know he/she can communicate with you openly about what he/she is experiencing. It is a rather unsavory topic so it’s easy to feel ashamed and want to keep it to himself, but that will only cause stress and inflammation which in turn makes the disease worse. Bottling up emotions is the last thing that needs to happen, so talk about it often and openly. Once you have done your research, this should be easy for you to do.
- Patience. In the beginning, when you are discovering triggers, it is important to remain open to trying new things. Not every style of treatment responds the same way to every patient. It takes time to really find a balance between the right medications, diet, and overall lifestyle. If treatment involves an ostomy bag, be patient while you both find a new rhythm of daily life that makes sense. Life will look a little different than it did pre-diagnosis and that is okay.
- Experiment with recipes. Nutrition is a vital part of effectively treating Ulcerative Colitis and Crohn’s Disease. Once you discover the triggers, you can modify meals and snacks accordingly. The key here is to make it exciting, not dreadful. It’s already going to be a traumatic time, so make finding new recipes a fun adventure. I’ve become the master of modification and take pride in my self-proclaimed title! Once you make it a challenge in your mind instead of a task, modifying food doesn’t seem so scary. For example, substitute regular milk for almond milk, avocado garnish instead of an egg at breakfast, and gluten-free bread instead of regular bread.
- Be in it together. I’ve had gastrointestinal issues with food my entire life, so it was not a surprise when a blood test revealed I had sensitivities to wheat, eggs, AND dairy. Instead of running for the hills when we were starting to date, Cody helped me find dishes I could modify when we were on a date. When cooking at home, he would make a “Holly-Friendly” meal and would eat the same, setting me at ease and making me feel normal.
- Flexibility and understanding. This is an important one…Don’t get frustrated when you both are late for a party or event because the other is in pain or is moving slowly. My fiance and I were at the door, ready to leave at 6am for a running workshop in San Francisco, when I ran to the bathroom and ultimately decided I was unfit for both an hour car ride and a running workshop. Instead of getting upset or frustrated at me, he simply called the lady and asked to reschedule for a later date. It wasn’t an issue, it was simply our reality that we took in stride.
I always want to be open and raw with you, my reader, and right now the raw truth is that I am writing this post through tear-filled eyes. I have had the most difficult times of my life since being diagnosed in 2008. 5 hospitalizations in 6 years, with minor flare-ups mixed in, proved to be more than I could handle physically, mentally, and emotionally, but I survived because of the people who supported me. My parents were with me through every hospitalization and every doctor’s appointment. On multiple occasions my mom found me laying in the hallway floor in the middle of the night because I was too weak and in too much pain to walk from the bathroom back to my room. Now I have the most supportive and wonderful fiance I could’ve ever asked for who cooks “Holly Meals” and makes sure I keep my health in check. How could a girl be so lucky to have so many supportive people around her?
You don’t have to be perfect to be a perfect caregiver. Want to know the real secret to being a rockstar caregiver? Love them. If you love your patient, then everything else will follow. Whether it is your spouse, child, sibling, or parent that you are taking care of, you are a rockstar- don’t forget it!